Primary bone cancer is a rare, yet brutal disease which can have a long-lasting impact on both patients and their families. With very few organisations focussing on the condition a group of bereaved parents came together and registered the Bone Cancer Research Trust in 2006 under the guidance of Professor Ian Lewis, Consultant Paediatrician and Adolescent Oncologist at St. James's University Hospital, Leeds.
Ten years later and with over £2 million invested in research the trust is at the forefront of the fight against primary bone cancer
With the Trust’s 10th anniversary fast approaching and the team thinking ahead to the next chapter, Alterline were commissioned by the Charity to conduct a comprehensive study into the experiences of those who have, or have had, bone cancer and their families and friends.
Our Living with, and beyond, primary bone cancer study highlighted the difficult journey experienced by many when seeking a diagnosis and the aggressive side effects and social impact of the condition and the accompanying treatments. These effects were not limited to the period of having the condition itself; indeed, long-term effects such as mobility issues and fear and anxiety were reported by many in the study. With survival rates at just over half of those diagnosed, bereaved family members also spoke at length about needing to learn to live again after their experience.
We produced a series of short films to focus on different aspects of living with, or beyond, primary bone cancer. In the film below Colleen tells the story of her difficult diagnosis and how it took her over five months to get to the point where someone believed her.
To watch more of the films click the links below:
The Alterline team presented the research at the Charity’s 10th Anniversary conference in May 2016 as part of the report launch enabling the stories of those affected to be heard by the primary bone cancer community.
The research has been used to develop a strategy and brand for Bone Cancer Research Trust. Read about it here.